Hashimoto's: I have been diagnosed with... - Thyroid UK

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Hashimoto's

peter-storm profile image
23 Replies

I have been diagnosed with Hashimotos my Bloods were

TSH 8.355, FT3 3.053, FT4 10.15.

I was first put on Levothyrox T4@ 25ug. I went back after a month and got bloods TSH 5.063, FT3 3.254, FT4 16.75 and was increased to 50ug.

A month later my bloods were TSH 6.118, FT3 2.828, FT4 12.04, I was then increased to 75ug.

Now I feel alot worse in my self and to me it looks like the more T4 I take the lower the T3 level is I am concerned my body is not converting it effectively. I feel more sluggish and gained weight quickly with a normal 2000 cals low carb diet with intermittent fasting, I have had to reduce my cal intake to 1500 a day.

I started taking 25ug Cynomel T3 a few days ago and want to reduce the T4 to 50 or even 25.

Does anyone have any experience with changing for T4 to T3?

I should add that I am from UK but now live in Cambodia, here I can get blood tests done in 3 hours for very little money and can also but T4 and T3 from the pharmacy without prescriptions.

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23 Replies
greygoose profile image
greygoose

Hi peter-storm, welcome to the forum.

I'm afraid we need the ranges for those results in order to say anything meaningful. Ranges vary from lab to lab, so need the ranges that came with your results. But, at a guess, I would say your problem is not that you don't convert, but that you are very under-medicated. The TSH should come down to 1 or under.

I have had to reduce my cal intake to 1500 a day.

Bad move. You need calories to convert, so reducing your intake can make you more hypo. I'd go back to 2000, if I were you. Your weight-gain is not due to too many calories. It is due to reduced metabolism and water-retention. Low calore diets are an absolute no-no for hypos.

Does anyone have any experience with changing for T4 to T3?

Yes, but T3 only is unlikely to be the best thing for you at this point. You haven't given levo a fair chance, and haven't taken enough of it to make you well. In fact, personally, I wouldn't even have introduced T3 at this point, it's too early. Keep the T4 where it is for the moment and give it time to work. Nothing happens rapidly with hormones, it can take months to find the right dose. :)

peter-storm profile image
peter-storm in reply to greygoose

Thank you for your reply, sorry yes I forgot to add the scale, TSH (N:0,30-4.50) T3(N:2.00-4.20) T4(N:8.9-17.2)

The problem is I went from 80kgs to 86kgs in about 10 days when I relaxed my diet up to 2000 cals and didnt worry about intermittent fast. I have always eaten on the 16-18 fast and 6-8 hours eating window. I did say to my doctor here and as he is Khmer he could not understand fasting cause he said he would not be able to go without breakfast, haha, funny really when I think back to the famine here in late 70's but anyway I digress,

I am really annoyed about the gain in weight as I always try to eat low cals, fresh, wholesome foods, no fast food or convenience stuff.

I have come back down to 83kgs after a week of eating 1500cals but still feel no energy same as before.

greygoose profile image
greygoose in reply to peter-storm

TSH 6.118 (0.3-4.5)

FT3 2.828 (2.0-4.2) 37.64%

FT4 12.04 (8.9-17.2) 42.17%

With those results, you are still hypo. Despite the levo increase, your levels are not even euthyroid, let alone high enough to make a hypo well - hypos tend to need a lot higher levels than someone without a thyroid problem.

Weight-gain is a hypo symptom. So, hardly surprising you're gaining weight, and it has little to do with diet, fasting, exercising or anything else except being under-medicated.

And, if you're eating low calories on top of being hypo, it's really not surprising you have no energy! Calories are energy, and yours are all being used up in an effort to convert T4 to T3 and keep you alive. Not point in trying to justify how you eat or whatever, No-one would even suggest it's your fault - well, not on here, anyway. We know what's what! :) But, if that's all you've got to worry about, frankly, I would say you're getting off lightly! Because there are so very many other things that can go wrong when you're hypo. I'm heavier than I would like to be, too, but that is the least of my worries!

So, why did your TSH increase and your Frees fall when you increased your levo? Probably because you have Hashi's, and it's normal for levels to jump around when you have Hashi's. Do you know how Hashi's works?

Do you mean that you added 25 mcg of T3 in one go? That is usually not recommended. Instead, we recommend starting on 5 or 6.25 mcg of T3 (so a quarter pill of 20 or 25 mcg pills), hold it there for several weeks, and then retest. T3 is more potent and faster-acting than T4, so the body needs time to adapt to it. I agree with greygoose that you added T3 too soon. You need to be on an optimal dose of levothyroxine for some time to know how well you convert. If you are a man, you are likely to require a slightly higher dose of levo than a woman. The usual recommendation is to take 1.6 mcg of levo per kg of body weight (some even say 2 mcg per kg of body weight). The goal should be to get the TSH to 1 or lower. Only when you have been on an optimal (for you) dose of levo for a longer period of time, as well as optimised vitamin and mineral levels, will you know if you need T3 or not.

So, let´s assume you weigh 100 kg. That would mean you probably need at least 160-200 mcg of levo daily. You were only taking 75 mcg daily which is very unlikely to be enough for your needs.

peter-storm profile image
peter-storm in reply to

Thank you for your reply,Sorry yes I did not clarify, I started taking the T3 at 25ug per day split into 2 doses, I was taking the first one with my T4 at about 8am and then my first meal is about midday. The second dose of T4 I was taking at about 8pm at night, I have since read that the halflife is less than I thought so if I continue to take I was thinking of doing 8am,1pm,6pm.

I just want to feel good again and get energy back so I can go to the gym more, all this sitting around at home cause of covid has made me lazy!!!

Oh and yes my current weight is 83kgs I want to get back down to about 79kgs.

Before I started this medication 3 months ago I was 78kgs and the only reason this came to light was I went into hospital here for an umbilical hernia op and the tested everything, before this I didnt know anything and had not been to the doctors for 20 years, I always go with the attitude ignorance is bliss and it seems I feel bad now and seem to have more problems as a result of seeing a doctor!!

in reply to peter-storm

Even if you end up needing T3 in the end, starting on 25 mcg a day (even in split doses) is too much. Also, if you have been hypothyroid for some time, your adrenal glands could be weakened and not able to handle the onslaught of T3. That could result in symptoms such as racing heart, sweating, restlessness, and insomnia. T3 is not a weight loss drug. As has already been pointed out, you did not give levo a proper chance to work . If we look at general guidelines, you are likely to require closer to 150 mcg of levo daily. You only took half of that and not long enough for it to work.

If you lose weight solely because you are on T3, you are likely on too much. Thyroid hormone drugs are supposed to normalise your metabolism so that you can lose weight, not cause weight loss by themselves.

It´s often said that T3 has a short half-life so therefore has to be taken several times a day. However, it will remain longer (up to three days) in your cells. So some people take T3 once a day and feel fine, while others prefer to multidose it. But, whichever method you choose, you should not start on 25 mcg daily.

Also, it may not be necessary to lower levo if on a tiny dose such as 75 mcg.

If you don´t need T3, it won´t make you feel better. If you are able to convert enough T4 to T3, once on enough levo and with optimal vitamin and mineral levels, that may be all you need.

I think most people here agree that T3 should be tried AFTER trying to make levo work, but not be your first option.

peter-storm profile image
peter-storm in reply to

Thanks for your reply, Yes I agree it has not been long but my free T3 went down on the last blood test after upping the dose of T4.

I read that sometimes if you take too much T4 that your body cannot convert it to the T3 then it will produce reverse T3 which will make things worse that is why I thought maybe adding the T3 directly my help.

I do notice that after I take it I feel an increase in energy levels and wellbeing, I started taking it at 8am and 8pm but have changed today to 8am and 4pm and feel better as I was getting tired in afternoons. (I am GMT+7)

I am planning to get my bloods done tomorrow or tuesday so I will be able to see what has happened.

I know I am new at this but I am very frustrated as I have not even seen a doctor for 20 years and this only came about cause of my surgery so part of me just thinks stop taking the tablets and get on with life like I did prior to this!!!!

in reply to peter-storm

Yes, but taking too much T3 or taking T3 when you don´t need it won´t make you less frustrated in the long run. Thyroid hormones are not a quick fix that will help you feel better immediately; it can take months of tweaking dosages until you find the right drug(s) and dosage for your body. As far as I know, all doctors prescribing NDT or T3 recommend patients to add a tiny dose (30 grains of NDT or 5 or 6.25 mcg of T3) daily, and possibly also reduce levothyroxine at the same time, especially if the patient has been on a full replacement dose of levo (100 mcg or more). NDT and T3 will then be raised slowly, over several weeks, with regular tests to see if you are on enough. I have not heard of any doctor telling patients to take 25 mcg of T3 daily from day 1. That is the danger of self-medicating; you need to know what you are doing. It´s possible to start on a full replacement dose of levo (provided you are under 65 and don´t have heart disease), but not a full replacement dose of T3. They have different roles and work very differently in the body.

So, even if you are anxious to feel better, and have been feeling bad for a long time, you should not start on too much T3 or raise it too fast. Time and patience are key when it comes to thyroid hormone replacement.

You are likely to feel more energetic when you are taking T3 as it´s more potent and faster-acting than T4, but if you take too much or raise it too fast that could soon make you feel overmedicated.

The myth of rT3 dominance has been debunked in recent years. It used to be believed that rT3 and FT3 competed for the same cell receptors, but that has been proven wrong. So there is no reason to take T3 to "cure" rT3 dominance. Having some rt3 is normal as that is the body´s way of getting rid of excess T4. I have read that ca 40% of the T4 a healthy thyroid produces will be converted to rT3. Plus, as greygoose has pointed out many times, there are many reasons rT3 levels can be elevated, and only one I think is thyroid-related. So, adding T3 and decreasing levo to treat rT3 dominance is not a good idea, especially if you have not tried to optimise levo first. Also, even if rT3 was the problem it was once believed to be, you would need to be tested for it first as it´s not the levels of rT3 that are important but the rT3/FT3 ratio. As far as I know, not many labs offer such tests. Also, if rt3 dominance was the problem it was once believed to be, you would need to have elevated FT 4 levels in order to end up rT3 dominant, as rT3 can only be made from T4. Your FT4 levels have been low due to hypothyroidism. In articles written when rT3 dominance was still considered a problem, the most common cause is said to be T4 overmedication. Given how rT3 is made (from T4), it would seem impossible to end up rT3 dominant with suboptimal levels of FT4.

I´d say that if your FT3 went down when you raised levo, that does not mean you need T3 or are a poor converter. You were probably not on enough levo to convert enough T4 to T3. Plus, when you add levo, your own thyroid gland will down-regulate its hormone production. You will be getting even less T4 from your own gland, along with insufficient T4 from the levo (75 mcg daily is not that high a dose), and this will result in lower FT3 levels. This is one reason some doctors now recommend starting on a full replacement of levo daily. Levo, not T3.

If you have vitamin and mineral deficiencies common in hypos, such as low vit D, ferrtin, and zinc levels, conversion is also negatively affected.

T3 is usally added after you´ve reached a full replacement of levo, been on it for quite some time, the TSH is 1 or lower, all nutritional deficiencies have been corrected, and your free T4 levels are high in range along with suboptimal FT3 levels.

peter-storm profile image
peter-storm in reply to

Thanks for your reply, good to know that my worry about reverse T3 is wrong so I will continue the T4 and see my doctor in another month as he suggested.

Like I say things are different here in Cambodia, low carbs and fasting are not understood by local doctors and also being fatter is seen as wealthy and successful!!

The good thing is speed, I can walk in and see a specialist, get blood test results in 2 hours and get any meds cheap from the pharmacy!!

Sounds like it is going to be a longer journey than I hoped so I will try to be more patient

in reply to peter-storm

It´s going to be a long journey all right, but you will get there in the end. It will just take longer than you might have expected. I wish there was a quick fix to thyroid problems but unfortunately that is not the case. The very active greygoose has also pointed out many times that thyroid patients should stay away from low carb diets as they affect T4 to T3 conversion. The same applies to low calorie diets. I have read that intermittent fasting is not a good idea when hypothyroid as the body might interpret that as starvation and lower metabolism even further. So, what makes healthy people lose weight might backfire in hypos.

peter-storm profile image
peter-storm in reply to

Interesting to know, yes I have always been one for low carb, and I.F as I used to feel better, of course I dont really know how long I have had this thyroid problem, could be many years or not.

I have dont many 42 hour fasts and really felt good but if it is the case that it is not a good idea it seems I may need to rethink my whole way of life.

I am very scared of weight gain and always maintained or lost weight with low carbs and fasting so it will be difficult for me to let go of that way and if weight starts to come on like it did a couple of weeks ago it will really worry me!!

in reply to peter-storm

If you gain weight because of hypothyroidism, it means your basic metabolism is too slow. You need optimal levels of thyroid hormone in order to lose weight. Trying to lose weight while undertreated is likely to fail. I tried WW before I was diagnosed and I was the only one in the group who PUT ON weight...of course, I had very low levels of thyroid hormone at the time, and the low calorie diet made matters worse. The fact is that I started to gain weight even faster while on WW´s programme...so I noticed a direct link between restriced calorie intake and low metabolism. What was especially detrimental for me was "saving" points to be able to eat more on weekends...that seemed to lower my metabolism even further as I was more or less starving on some days.

peter-storm profile image
peter-storm in reply to

Yes it is a minefield, I, however never feel hungry as my body is used to the lifestyle and that is why I am reluctant to change as it has always worked in the past.

Just had an Indian take away for dinner, I wouldn't have this had I not posted here, usually my dinner is chicken breast and broccoli or cauliflower!!!

Thanks for the advice I will look at adding some carbs to my diet to increase the cals to 2,000 a day.

I will just have to play the wait and see game to see how it all plays out, I would just like to get back to 78kgs like I was 3 months ago.

in reply to peter-storm

I think that greygoose said it very well in a recent post:"Ratios have nothing to do with treating hypothyroidism. Ratios are for healthy people. A hypo needs what she needs, in whatever proportions that make her well. It is not helpful in any way to compare a hypo with a euthyroid person. Everything is turned upside down when you become hypo – as you should know. We have to adapt to a completely different way of functioning".

That´s very true. What I mean is that what used to work for weight loss may no longer work when hypothyroid. That is especially true when you are undermedicated.

Do you know the reason you are hypothyorid? Have you been tested for antibodies to determine if you have Hashimoto´s disease aka autoimmune hypothyroidsim? That is the most common cause of hypothyroidism.

peter-storm profile image
peter-storm in reply to

Yes I was tested for antibodies, here is the result;-BTW I am male

Antibody Thyroglobulin 29.43iu/ml (N:0.00-4.11)

Microsomal Ab (Thyroid peroxidase Ab) 362.75iu/ml (N:0.00-5.61)

in reply to peter-storm

So that confirms Hashimoto´s. You have probably had it for years. Now, all the hard work starts, but you will find a lot of knowledgeable and supportive people on this forum:-)

peter-storm profile image
peter-storm in reply to

Thank you, yes I will keep reading, it just bothers me that if I have had it for years and always done low carbs and I.F. with success and now taking meds it does not work in the same way.

greygoose profile image
greygoose in reply to peter-storm

I read that sometimes if you take too much T4 that your body cannot convert it to the T3 then it will produce reverse T3 which will make things worse that is why I thought maybe adding the T3 directly my help.

Yes, that's sort of true, but I think you may have misunderstood slightly. Normally, in a healthy person, a certain percentage of T4 is converted to T3, and an equal amount to rT3 - can't remember the numbers - so there is always some rT3 in the system. However, if the FT4 goes too high in range - and I mean right up the top, or over - which is absolutely not your case - more will be converted to rT3, and less to T3. But there will always be some converted to T3.

But, rT3 - as Hidden says - is not the problem. It is inert, doesn't cause symptoms, doesn't block T3 receptors, and only hangs around for a couple of hours before being converted to T2.

it´s not the levels of rT3 that are important but the rT3/FT3 ratio.

Sorry, PurpleCat71, that's not important, either. In fact it's pretty meaningless. Because FT3, as the name suggests, is all Free T3. But the rT3 that is measured is both Free and bound. So, it doesn't tell you very much. What is important, and causes symptoms, is the low FT3. But, peter-storm, your FT3 is low because you are under-medicated. You're doing what the French call: looking for two o'clock at midday - i.e. searching for the wrong problem. :)

peter-storm profile image
peter-storm in reply to greygoose

Thank you for your reply, yes, the T3 is too low and when I saw my FT3 level go down on the third blood test after upping the T4 I was worried about rT3 but as you say if that is nothing to worry about I will just keep on the 75's till I see my doctor in about 4 weeks.

BTW Grey Goose is my vodka of choice!!!!

greygoose profile image
greygoose in reply to peter-storm

Sigh. I am not a vodka drinker.

75 mcg levo? I thought you'd reduced it to 50. You must not keep changing your dose like that or you will make yourself worse. Try and stay on a stable dose for at least six weeks and then retest. Repost your levels after that and let's have a look.

You didn't answer my question above: do you know how Hashi's works?

peter-storm profile image
peter-storm in reply to greygoose

No, I am still taking 75ugs in morning when I wake up and have been for 3 weeks so far, will get test in a couple of weeks then

greygoose profile image
greygoose in reply to peter-storm

In three to four weeks would be better.

Maybe now your metabolism has reached an all-time low, and this affects how your body reacts to various diets.If you need advice from members who have had success using low carb diets/IF, I´d suggest you write a new post so that members will see it.

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